Tale of Two Trips

Bust of Diego, 1957 and 1955 by Alberto Giacometti

Made two trips in the early part of the summer, both carefully planned yet each turned out quite different. And so the detective work continues. How to travel with minimal setbacks so that neural fatigue from sensory overload doesn’t throw a monkey wrench into the enjoyment of a trip. I would say it takes forensic planning to increase the likelihood of a successful trip.

Flight across the country

The first trip was a thirteen day trip to the west coast of the country. A trip that involved a short car ride and a commuter train ride at both ends of a four hour flight. The plan was to make the time at our destination long enough to get into a familiar routine. On the whole the trip went very well except for one PTS trigger event that effected me for two days. That trigger event could have happened anywhere so I don’t consider it in determining that the trip was a success.

During the thirteen days away from home I was able to maintain a routine that allowed me to keep sensory loading within a manageable range. That meant I wasn’t dealing minimally with neural fatigue.

Drive across the province

The most recent trip was a nine day 1600 km road trip. To make the 800 km drive to our destination manageable we did trip over a two day period traveling about 400 km each day. The first day of driving seemed to go well most of the way. However, by the time we have covered 400 km neural fatigue had set in. That was despite planning for two pit stops. The first pit stop was at IKEA, a great place to sneak in a 45 minute nap. Consider that a promotional plug for IKEA furniture.

The second day left me even more fatigued. Two days of driving had a cumulative effect on my sensory loading. I hadn’t considered waiting a day to recover a bit before completing the second leg of our trip. When we arrived at our destination I experienced an even greater level of neural fatigue. At that point I was too tired for a physical workout, but too restless to get a good night’s sleep. An unfortunate combination.

When I’m dealing with neural fatigue it effects my sleep. The greater the neural fatigue the weirder my dreams. If my neural fatigue is in the extreme I’ll likely experience unpleasant dreams or nightmares. This happens when my brain is too scrambled to distinguish between what is reality and what is a dream.

Getting into a routine

The morning after arriving at our road trip destination I did a comfortable 35 km bike ride with minimal climbing. I had a nap following that two hour ride. I kept up this routine each morning for the next three days. It wasn’t till the third day that I was able to clear the neural fatigue. Relief came on the third day following an 85 km ride which ended with a 15 minute ride through pouring rain. It was a relief to finally feel normal again.

A few days later we were scheduled to head back home. The drive the first day went very well. It was a relaxing drive along secondary roads for most of the way. Yet this same stretch of road had left me in rough shape when we drove it a week and a half earlier.

Seeing how well the first leg of the return time went reminded me of the importance of starting a road trip with minimal neural fatigue. The focus and attention that is a key part of driving will contribute to neural fatigue. On the first leg of the return trip I also made a point of taking longer breaks. It seems like the combination of minimal traffic congestion, a relaxed speed (mostly 80 km/hr) and well timed breaks is a workable combination.

Three days later we continued with the second leg. The second 400 km leg of our trip left me with significant neural fatigue. We made two one hour pit stops. However, that didn’t compensate for the intensity of the traffic. The combination of faster speeds, multi-lane highways, and increased traffic congestion is difficult to manage. Can’t do much to work around these factors.

Decompressing

On arriving at home late in the day I was dealing with a heavy dose of neural fatigue. Being on home turf gives me a few extra options to deal with it besides taking out the bike and cycling for a hour or so. When I arrived home I considered napping briefly but I was too restless to manage that. Instead I walked around the yard for awhile. After about fifteen minutes I started hoeing a section of the garden building up a bit of sweat. That helps create physical fatigue which is much more conducive to minimizing insomnia.

Factors to consider

The detective work work of determining what factors most directly contributed to neural fatigue is based more on circumstantial evidence rather than concrete evidence. It is usually a combination of factors that creates a situation that puts me at my limit.

1. Weather is a factor I always need to consider. When the weather turns hot, the effects of sensory loading and neural fatigue compound the situation. Even when driving a car with air conditioning, there is the non-driving time to consider.
2. Both sensory loading and neural fatigue have a direct impact on the quality and length of sleep.
3. When driving, the speed of the highway and the amount of traffic congestion are significant factors. Getting into a traffic slowdown or a stop and go situation is not too problematic because everything happens at a slower pace. With the pre-collision feature on the car the stress of rear ending the car ahead is greatly minimized.
4. The length and quality of the pit stops. Having a familiar pit stop that allows me to take a nap is ideal. Unfortunately, the additional pit stops makes every out of town trip a bigger ordeal. That does add a level of stress to each trip when considering any other passengers in the car.
5. The vestibular challenges caused by the repetitive motions associated with travelling by car are much more pronounced than travel by air. Roads with serious pot holes or concrete surfaces with section breaks are most likely to cause an accumulated affect.
6. It helps to have nutritious snacks both in the car. Anything that helps to maintain my energy level is beneficial.
7. Each trip involves a discussion and plan of who drives the different legs of the trip. Being a passenger contributes to sensory loading and neural fatigue in a different way than being the driver. It would make things very simple if being a passenger had a zero impact on me.

Despite forensic planning it’s becoming clear that it is not an exact science guaranteeing a foolproof solution. For each out of town trip I will continue to plan for recovery time. That means not having any commitments for the first couple of days on arriving at home.

P.S. Since I published this blog posting in the middle of my setback I want to provide an update.

It took me a full week to shed my fatigue and be able to function reasonably well on a daily basis. During my week long recovery time I had a difficult time dealing with strenuous physical activity. This included not biking at all. Of the four areas that put me at risk of neural fatigue, it’s the emotional loading and the resulting neural fatigue that has the slowest rate of recovery.

Fortunately I rarely hit a ‘perfect storm’ of several emotional events converging at the same time. One can remove onself from a social setting that is causing fatigue, or take a break from a cognitively demanding activity that is causing fatigue. However, taking a break from an emotional experience is a whole different matter. The emotions and the events that create it linger in a much more pronounced way than other matters which cause neural fatigue.

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Martial Arts and Living with ABI

WiFi and Wireless Cables are not the only wires that are crossed.

Most of my challenges when it comes to managing my ABI symptoms happen when I’m away from home when my routines and familiar places are disrupted. When I’m home things are generally predictable. If I get into an unpredictable situation, being home allows me to return to a reasonable level of daily functioning within a day or so.

Recently that pattern was disrupted. I usually don’t post a blog while I’m at loose ends. This is for two reasons:

1. I usually choose to share once I’ve more of less figured out what is going on in my recovery strategies.
2. I usually lack the energy to post a blog or lack the cognitive coherence till the neural fatigue clears. Set backs often involve cognitive overload and so I need to consider the demands I put on my brain.

This time I’m in the middle of a multi-day slump with cognitive and neural fatigue. My ability to deal with situations is at a low point. I’m not adverse to having people around me but as soon as someone drops in for a visit, not matter how brief, I realize how fragile I am.

When I have a visitor I will muster my energy, especially after a nutritious snack, and manage to participate in a limited way in the visit. Receiving a visit when I’m at a low point helps relieve some of the isolation while at the same time it accentuates the isolation that comes with living with ABI.

How Did I Get Here?

The discouraging part of hitting a low point for several day while at home is the mystery of determining how I ended up there. This week there were no challenges such as I am accustomed to dealing with while traveling or even being out of town for a day. I’ve been close to home all week. Haven’t been further than 50 km from home and then only for a few hours.

I was first aware of my current state of ABI affairs the morning after attending the Fourth Line Theatre play, Carmel. I have been attending the Fourth Line Theatre on an annual basis. Attending a play usually turns into an event with a few friends as I did this week.

The play Carmel was emotionally taxing for me. Even though I know it’s a story, my brain lacks the filter that would otherwise allow me to keep better emotional distance. With a movie I’m better able to keep a bit more emotional distance because it is a less personal media.

In the case of watching Carmel, there was also the real life emotion of watching a young actress doing such an wonderful job, acting in real time. The emotion of the story was further highlighted with live music interspersed throughout the evening with lyrics that were both humorous and emotionally touching.

The intermission was a timely break for me to walk away from the crowds and take in the restful sounds of the rural landscape as it approaches sunset. Needless to say the second half of the play added to the emotional sensory loading that was only partially shed during intermission.

The Day After

It was the morning after the play that I became acutely aware of the challenges I was dealing with. I had no commitments for the day so that was in line with good ABI daily planning. The plan was to take it easy, do some gardening  and have a mid day nap.

Technical Support Line

But life intervenes. The internet has been down for a day or more. And so I was called out of the garden to deal with the phone call with a technician from our ISP. All seemed to be going well. The technician was polite and was not trying to rush me. In addition he insisted with staying on the phone till he was double sure that every device was connected and working properly.

When things were finally resolved, after about an hour with the technician, the full force of my neural fatigue hit me. My first comment when I got off the phone was that he talked too much. Various times as he was stepping me through the trouble shooting he would keep talking.

I would tell the technician that I got it. He would keep explaining what to look for  and what else might be helpful. Unfortunately  I’m unable to block out the additional irrelevant information. At the same time I’m trying to make sure I don’t miss his next instruction. The cognitive demands of balancing this was slowly but surely contributing to neural fatigue.

The other challenge is that he was not good at listening. He asked me to identify the brand name of the router – a Belkin. Even though I told him he kept referring to a D-Link router and giving instructions based on a D-Link router.

Had I realized what his over explaining was doing to me, I would have stopped him. It would help if he would exercise some economy in giving instructions. (That’s my reminder for the next time I’m on the phone with a technician.)

Untimely Repair

My second matter of life intervening happened a few minutes after the phone call. It was my solely my decision. No pressure except for the pressure I put on myself to get rid of an annoyance. So I felt it was an urgent enough matter. The patio door screen had been jammed for the past couple of days. Since it’s the most heavily used door in the house I decided to trouble shoot the issue.  It would just take a few minutes I told myself.

After about 15 minutes I got frustrated and lost patience. I should have realized that dealing with neural fatigue following the hour long phone call with the technician is the worst time to tackle a problem solving repair.

I walked out of the room, lay down and slept for two and a half hours, waking up shortly after lunch time. The rest of the day I made no attempt to be productive. The nap did little to reduce my neural fatigue. I would move between doing a bit of gardening and reading or else just sit and ponder. This went on for the next couple days.

Getting a Handle on Myself

My emotional gauge is still fluctuating widely. As I reflect back on the earlier part of the week there was a number of things that happened that contributed to my current state. Two friends had shared some upsetting news. In both cases the news has been gradual in the making. The upsetting news had elevated my emotions before attending Fourth Line Theatre. Maybe that’s why the play Carmel had a bigger impact on my emotions than I expected.

It’s Like Martial Arts

In martial arts it’s not the strongest or the biggest person who overpowers their opponent. It’s the person who knows how to make a timed mechanical move with minimal energy to put their opponent off balance. The greater the control and the better the timing the less energy or strength that is needed.

When I look back on the last few days it isn’t that I have encountered an unusually major event that set me back. It’s more like a series of slight moves that has bit by bit put me further and further off balance. In between there hasn’t been time to recover my balance. It wasn’t till I was too far off balance that I realized what was happening.

And so, I will just have to give it time. I know from experience that gradually I will improve. And then it will seem like suddenly I’m in a good space again.

I’ll get there:

1. Keep a familiar routine.
2. Don’t take on any significant commitments.
3. Eat well
4. Sleep and nap
5. Keep up a reasonable level of physical activity.

The goal is to replace neural fatigue with physical fatigue.

Wab Kinew, The Reason You Walk

Wab Kinew’s book, The Reason You Walk, Viking (Penguin Group) 2015, is a read that will give you a deeper appreciation for the experiences and eventual resignation tendered by The Honourable Jody Wilson-Raybould. (February 12, 2019) As an indigenous member of parliament much of what it entails being a member of the Liberal Party of Canada went contrary to her cultural roots. Kinew also gives some insight into why she did not simply sign onto another party despite being warmly invited.

Wab Kinew has given us a book with profound insight into living as an indigenous person in a dominant culture in which the quest for mutual understanding can be a life long quest. In the process he shares some insight that is applicable across cultural lines that forms the building blocks for a strong community, namely a strong family.

Excerpt #1

I asked him to repeat himself.

“If a son helps his father when he is sick, then his son will help him when he is old.”

Ndede had stood by his father in the residential school cemetery all those years ago. In turn , his son and daughters has stood beside him as he walked to the spirit world. Standing for him there, waiting on that side, were his two eldest boys. Now, in this place near the Gulf of Aden, on the other side of the planent from Lake of the Woods, another child stood beside his parent.

We stand by those who came before us, hoping that those who ome after us will honour us in the same way. We love, and we hope to be loved.

Whether we are young or old, whether our skin in  light or dark, whether we are man or woman, we share a common humanity and are all headed for a common destiny. That should bind us together more strongly than divisions can push us apart. So long as anything other than love governs our relationship with others, we have work to do.

When the division s win out, we need to work hard and bring that which has been broken apart back together again.

 We ought to recognize that our greatest battle is not with one another but with our pain, our our problems, and our flaws.

To be hurt, yet forgive. To do wrong, but forgive yourself. To depart from this world leaving only love.   (page 268 Wab Kinew 2015)

Excerpt #2

Wab Kinew explains the title of the book with four interrelated ideas:

In the little roundhouse in Wauzhushk Onigum, I had been taught the song when I was young. Kwekwekipinessiban explained the lyrics in Anishinaabemowin, and Ndedeiban (‘iban’ is added to the person’s name in referring to them after they have died.) translated the teaching to me. I had been told the four layers of meaning to the words “I am the reason you walk.” delivered as though it is God speaking to you. Now the Creator was speaking to my father.

I am the reason you walk. I created you so that you might walk this earth.

I am the reason you walk. I gave you the motivation so you would continue to walk even when the path became difficult, even seemingly impossible.

I am the reason you walk. I animated you with the driving force called love, which compelled you to help others who had forgotten they were brothers and sisters to take steps back toward one another.

And now, my son, as that journey comes to an end, I am the reason you walk, for I am calling you home. Walk home to me on that everlasting road.

With a loud, echoing drumbeat, I brought the song to an end.

(page 252 Wab Kinew 2015)

Excerpt #3

Wab Kinew’s vision for the future against the background of colonization and the attempts to take the ‘Indian out of the person’ by way of the genocidal policies of the Indian Act that resulted in the ‘residential school system’  is a complex issue that puts a lot of responsibility on indigenous people.

Challenges remain. First Nations children begin life facing longer odds on the road to success than others, because they lack equal access to education , health care, and social services. We must correct these problems where they exist. Indigenous people must also take more responsibility for our own affairs, which is something most members of my generation strongly believe.

As a result of colonization, many Indigenous peoples have been prevented from contributing fully to our globalized society. Consequently, the Indigenous cultures practised by thoses peoples have not been able toshare their stength, wisdom, and beauty with the rest of the world.

I envision Indigenous people rising above their challenges to become the leaders this world desperately needs. I see them helping to chart the way to a more sustainable society and a more meaningful way of life.

Many solutions to the challenges of our time – from income inequality to environmental degradation – can be found in Indigenous cultures. If we start to see the earth as our mother, we will likely chart a course to a more environmentally friendly way of life.

If we grow up hearing that the chief ought to be the poorest member of the community and that true leadership is about service and sacrifice, we might think harder about income inequality.

And if people on opposite sides of seemingly intractable showdowns over land and resources began to take one another as kin, perhaps we might find peace in situations that we currently consider lost causes.

While there are political and economic lessons to heed, we cannot forget that, at its core, reconciliation is a spiritual and emotional journey.

My heart still aches for the man who walked ahead of me on this path, that man I see now only in visions. (page 266-7 Wab Kinew 2015)

 

Triggered

Galloping Goose Rail Trail – Near Sooke BC

A recent incident reminded me that, since my injury, dealing with traffic carries the risk of seriously changing the trajectory of my day.

Being in a car

Since my injury I have increased my endurance riding in or driving a car from a half hour to an hour without needing a break. At times I’ve managed over two hours without a break.

I’ve also improved my recovery time following a car trip from needing three or four days to recovering in as short as a couple hours.

Having done trips, some of a couple hours and some approaching five hours over the last four years I’ve had opportunities to fine tune the drive to help me arrive at my destination in relatively good shape. Well, let’s say most of the time.

When I’m not in a car

What is much less predictable for me are traffic situations when I’m a pedestrian. These are fortunately few and far between. However, when they do happen they have a significant effect on me.

I recently dealt with such an incident. Prior to my injury I might not have even noticed anything or forgotten about it a short time later.

I had just crossed a major intersection while on a morning walk. It was the morning rush hour. Suddenly I was aware of a sound of tires of a car out of control. It was not very loud but a definite change from the hum and cadence of the busy commuter traffic.

I noticed my body suddenly tense up. I was expecting a follow up sound, that would have mimicked the sequence of the accident that caused my ABI. There was no follow up sound other then a quieter repeat of the ‘out of control tire’ sound.

Next thing I knew I was in tears. Both the noise and my reaction to it took me by surprise. This kind of situation and response hadn’t happened in a long time.

What helped to reduce the stress of the situation was being aware of trigger events when living with post traumatic symptomology.

Direct consequences

I continued my morning walk, though I was in a hyper vigilant mode while there was traffic nearby. This was even more apparent at each busy intersections. I found myself in tears off and on for the next couple hours. The slightest change as I walked would set me back.

I continued my walk since physical activity that has a simple rhythm to it along with low cognitive input I find helpful for recovery. (I find cycling the most helpful but I had no bicycle available. The pedaling action creates a more controlled rhythm than walking.)

Longer term effects

As long as I was walking I was doing reasonably well. But I couldn’t keep walking all day. I returned to my lodging place after walking 11 kilometers.

For the rest of the day I was dealing with neural fatigue. I had a short nap after my walk. That did not improve my condition by much.

As the day progressed I was dealing with a low grade headache. In itself not too hard to manage. It was the type of headache that I’ve come to recognize as minor brain swelling.

I found myself operating in a non-verbal mode most of the day. Talking required too much energy. I needed to conserve my energy to simply get me through the day. By early evening and a second nap I had enough energy to talk.

After my morning walk I took a shower. The sensation of the water, particularly on my head was very difficult to handle. It was a clear indication that I was dealing with sensory overload.

Traveling Challenge

Dealing with ABI related effects while traveling makes recovery more difficult. The disruption of routines and a loss of familiar places means I need to be more cognizant of what is happening around me.

I’m glad I wasn’t asked to give input on the plans for the day. That takes too much thinking – too much neural activity. I was fine with simply going along with what was being planned or kindly opting out. I went along for the car ride which went fine. The ride was under an hour so that helped.

I joined in for a couple hikes. That was good but I needed to set my own pace. It takes too much neural energy to match my pace with others.

I opted out of swimming. The sensory loading of dealing with water was out of the question. The fact that the swimming area was fed by a mountain stream would compound the sensory loading.

Evening of the first day

Late afternoon I had a second short nap. After supper my level of fatigue had improved. Conversation was easier and therefore more enjoyable.

My sleeping pattern had been working very well for me for the past number of weeks. That night things did not work out. Well past midnight sleep still seemed a long way off.

Sense of humor

When I looked back on the day I realized I had room for some humor. Just before starting the hike near the mountain stream a couple visitors at the park stopped me to ask about wildlife. They wanted to know where they could see some wildlife. I mentioned that there was a warning sign at the park entrance that there was a bear in the area.

The visitors wanted to see the bear and wondered how to call it. I suggested calling the bear “Freddy”.

My Recovery Strategies:

– Lie low for a day or two.

– Maintain my basic daily routine.

– Stay physically active.

– Eat or snack regularly – build up energy level

– Minimize decision making.

– Minimize cognitive activity.

– Spend time outdoors in a natural environment away from city noises

– Journal about the incident (I choose to do mine in the form of a blog posting.)

Over time I have added to my list of strategies.

Day Two

After being wide awake till the wee hours of the morning I was pleased to have slept a couple hours later than usual. That was helpful. I noticed a significant improvement in my energy level.

I not long into the day I noticed that I was still emotionally quite vulnerable.

The plan for the day was to going biking with the two of us. Bikes were rented and we headed out. My goal was to get about 40 or 50 km in. I didn’t want the ride to be too short since I find cycling helps to clear my sensory loading.

It was a cool and breezy day. We had decided on following a rail trail bike path. The bike path being well away from traffic most of the time, proved to be a good choice. By the time we finished the ride we had covered about 100 km (60 miles). I was pleased with how the day went and the progress of my recovery.

Day Three

Having put in a long day of vigourous activity, and having taken only a short nap, I was pleased to get a good night’s sleep. We would be leaving the city today and spending several hours traveling by car and ferry.

I was up early so decided I would start the day with a good bike ride. Fifty kilometers later I was back for a second breakfast. I had time for a short nap before helping pack for the trip.

I was in even better shape today than I was a day ago. All very promising. That is till the ferry was ready to pull away from the loading dock. There was a blast of the horn. I should have expected that but hadn’t been paying attention. It lasted longer than the blast we had a week ago coming to the island. That one hadn’t effected me beyond the initial startled response.

The ferry horn blast today was just too much. My brain went ‘numb’. I was in serious sensory overload. I could only manage basic functions. I just sat where I was. With my hands over my ears I muted the general noises around me. For the next half hour I focused on getting my sensory loading to level off and help me relax. Eventually I managed to read for awhile. Conversation would have been difficult.

Not long after I had started to read again there was an unexpected blast from the horn. There had been no second horn blast on the way to the island. While most would describe the sound as ‘ear piercing’ to me it was ‘brain piercing’. Having the second blast so soon after the first one was devastating. While it might sound melodramatic, my best description is that is felt like my brain had been split open. The effect was exponentially worse than the first one. (Think of it as hitting your finger with a hammer the second time within the same hour.)

The effect of the second horn blast took me much longer to cover. The sensory overload that resulted set me back several hours before I was able to engage with others.

One of the side effects of the ‘brain piercing’ event is experiencing ghosting. (Some people call it double vision.) Everything I looked at had a shadow. I wear progressive bifocals and so I can experimented with looking at things through different parts of my glasses. It didn’t change anything.

By evening I found it impossible to focus. Only nearby objects were clear enough enabling me to still read. Thankfully by the next morning the ghosting had cleared.

Summary Points

Developing the knowledge to manage ones sensory loading had a direct bearing on ones quality of life. Some factors to consider to reduce the repeated occurrence of sensory overload can be summarized as:

• Every sensory input affects ones sensory loading, including thoughts.
• Sensory loading can and will be carried over from the previous day or days.
• Certain sensory events can be tolerated if ones sensory loading isn’t too close to the limit.
• There’s no clear measure to know how close one is to reaching sensory overload.
• The recovery time will depend on the nature of the sensory loading and the intensity of the sensory event.
• Each person needs to find an effective recovery strategy that works for them.
• Ones resilience to sensory input will increase the longer sensory overload is avoided.

Feedback

Acquired Brain Injury (ABI) is different with every person. The severity of the injury and the areas of the brain that are affected makes each injury unique. There might be lessons learned from others but each person becomes their own detective in learning to live with the injury.

The above list is a summary based on my experiences. I would love to hear from others based on personal experiences. What would you add to the list? What would you modify from this list?

Travel Challenges

Veteran’s Park – Burnaby, BC

This trip started much better than a trip I took earlier this year. This trip started with a pleasingly successful flight.

It has now been a week of effectively managing sensory loading. Having managed to curtail the negative fallout of a plane flight across the country I resolved to maintain my level of mindfulness in staying attuned to my sensory loading. I am well aware that it is very difficult to recover from sensory overload when I’m away from home or in unfamiliar surroundings.

After arriving at my destination a week ago, after my flight I chose to deal with my neural fatigue with a 25 km cycling tour of the city. Doing a vigorous 25 km ride enabled me to get a good night’s sleep. The activity had cleared the neural fatigue so my time sleeping could clear my physical fatigue.

Each morning since arriving I have done a bicycle ride of 10 to 50 km before joining my hostess for breakfast. This routine followed by a short nap after breakfast has enabled me to participate in a variety of activities the rest of the day. This has been invigorating and very encouraging.

It has been very helpful to have set up an effective routine to start each day. Being in unfamiliar surroundings while being away from home and away from familiar environment and routines, having a new and consistent routine is helpful to reduce the risk of sensory overload.

Lesson learned

The need and the beauty of enjoying a successful transition while traveling was highlighted today when it fell apart on me.

My routine was changed today. I did not have time to put in a one or two hour cycling trip. I limited myself to a half hour. I needed to give myself time to pack and meet the ferry schedule.

Aborting or seriously altering my morning routine affected me the rest of the day. I just couldn’t seem to wake up fully. Time and again on the way to my next destination I would nod off.

Making Choices

In between the fits and starts of napping I did some reading. I read about half of “The Reason You Walk“. The book is Wab Kinew’s personal and family’s struggle growing up and living as an indigenous Canadian. Kinew’s family are residential school survivors.

In hindsight this was not a helpful choice of a book to read today. My sensory loading because of the troubling emotional struggles Kinew shares added to my challenges today.

Choosing some light reading would have been a smarter choice. Had I not set a goal of finishing the book before I needed to return it, I might have made a better choice.

No short cuts to planning

This once again highlighted for me the need to plan carefully anytime some significant changes happen in my life. There are usually a combination of related factors that need to be considered.

The planning for today should have started when the ferry was booked a few days ago. Had I considered the time the cycling would have taken in my morning routine I would booked a ferry for later in the day. That would not have disrupted my morning routine – which in turn had a domino effect on the rest of the day.

The idea of structuring this trip so we would spend a longer block of time in two different places was a good plan. The success of the first week is proof of the plan being good.

Planning the start of the trip was done with intentional detail. Yet I completely overlooked the importance of planning the mid trip transition.

Moving forward

We learn from our mistakes. Or to put a slightly different spin on it, I need to learn from my oversights. When things go well it is so easy to overlook the importance of making thorough and well thought out plans.

I will see how tomorrow presents itself to me.

Bridging What I Need with What I’ve Learned

Lions Gate Bridge at sunset

I recently made a trip across the country. I was pleased with how well it went. There are likely a large variety of factors that contributed to a good trip, with some things being planned plus factors just happened to fall into place.

The important thing is to make note of what plans worked. Secondly, it is helpful to make note of which unplanned factors added to the success of the trip.

Days leading up

Since the trip would have us away for home for a couple of weeks it was important to make arrangements well ahead of time. I made sure I had coverage for things that needed tending while I was away. I also made sure I packed all essential items ahead of time.

We also worked out the additional details surround our flight across the country. Commuter train times and connections. In the end we needed to take four different commuter trains. I had taken the commuter train into the city a couple weeks ago so I was not into unfamiliar territory.

The Day of

When I woke up on the day of leaving I chose to follow my morning routine. I did a 10 kilometer pre-breakfast bike ride. The vigorous half hour activity left me feeling wide awake and energized. I also spent about a half hour in the garden. I had forgotten to hoe one section of the garden the day before. It put me at ease knowing I had done the necessary tasks to reduce the growth of weeds while I was away.

Ready to head out

Rather than drive, we had arranged for a friend to get us to the train. We boarded the train with 2 minutes to spare. A 15 minute wait for the next connection would not have been a problem. When we made our next connection we  had to make our way to the far end of the train station. We arrived at the connecting train with 5 minutes to spare. Once again, had we missed that train the next one would have come by shortly. Our next connection was a shuttle train that ran regularly between the airport terminals.

Plane seating

The check-in procedure went very smoothly; no line ups, no computer glitches and what seemed like a suitable seat choice. The computer offered seat A and B. The number 30 didn’t mean anything to me. Was that over the wing, or was that behind the wing. The A and B seats suited me fine because taking a window seat meant that I would not be interrupted by a restless passenger wanting to get past me at unexpected times. I was also away from the aisle with foot traffic constantly coming and going. The one drawback was being unable to recline my seat.

Boarding and Take off

Shortly before being called for boarding, there was a request to have passenger check in their carry-on baggage. We decided to opt for that since we no longer needed what was in our carry-on. That turned out to be a great choice. Airline staff would take care of it till we landed.

When my section of the plane was called for boarding I remained seated in the waiting area. I wanted to avoid the unpredictability of waiting in line. When the last call was announced for my seating area I got up and got in line; three people ahead of me. Being one of the last to arrive in my seating area there was minimal space left for carry-on baggage. Having checked it last minute turned out to be an excellent strategy.  (Note for future flights.)

The number 30 meant I was in the very last row. The only real drawback was a slight one. I could not recline my seat the few degrees that any other seat might have allowed.

I had taken my headphones along which cancelled most of the flight noise. The drone of jet engines seem to be louder when seated in the back of the plane. I tried reading but found it difficult as I would drift in and out of napping. Sitting in napping / awaking limbo for four hours seemed to work fine for me. I did get up and stretch once during the 4.5 hour flight.

The snacks I had taken along was in my knapsack, not in my carry-on baggage. I made a point of remaining hydrated. Between the juice and ginger ale being served and my water bottle that went well. Having taken along my own snacks I had on hand what snacks worked best for me.

It was a day time flight with clear weather for 75% of the time. It was great watching the changing land forms and evidence of human activity below; the lakes and trees of northern Ontario, the farmland of the prairies with irrigation circles in places (not crop circles), tracking the traffic on the Trans Canada highway (trying to identify parts I had cycled 2 years ago) and the mountainous terrain along the Atlantic/Pacific continental divide.

Arrival

When we landed I waited with trying to get off the plane. I find it best to avoid standing line, the crowding and the unpredictability that comes with that type of active waiting.

By this point in our travel I was approaching my limit. I was tired. I was hot. And we had another 40 minutes to reach out destination.

I waited at the baggage carousel. I watched as the baggage emerged from the nether regions of the airport. I did not recognize my baggage as it arrived. Somehow my memory between checking my baggage 5 hours earlier and arriving to retrieve it my memory failed me. When I finally found it I realize they were one of the first pieced of baggage to arrive on the carousel.

The Final Leg

We had a family member greet us as we emerged from the airport. She had decided to meet us by transit rather than come by car. Even though the transit ride was hot, what helped is that it was predictable. Commuter traffic at 5 pm would have been much more challenging by car. Being escorted onto the transit system worked well as I didn’t have to figure out what to transfer and which bus to take.

Recovery

After visiting for an hour and having a hearty meal I heading out for a bike ride. I had recovered enough to take that on. For the next hour and a half I enjoyed some wonderful bike riding in what I would call a very ‘bike friendly’ city. I was familiar with the basic layout of the city so I found my way around with only one request for directions.

The success of the 90 minute bike ride was a good indication that I would sleep well. It was great to not have to go through a prolonged recovery phase. Detailed planning and being my own ‘detective’, as my OT encourages me to be, clearly paid off with this trip.

Plan ahead, take notes on new strategies that work, and leave time to make up for oversights are my strongest take aways at this time.

From Les Mis to Come From Away

Visiting St. John’s NF – having come from away

Just over four years ago I attended a local performance of Les Mis. That was a few weeks following my injury which was eventually labelled as an ABI. (acquired brain injury). At the time I was struggling to hold onto my job trying to at least work half days and gradually failing at that.

I had no idea what effects a musical performance would have on my ABI condition. About 15 minutes into the Les Mis performance I was dealing with sensory overload but having no previous experience with it, had no idea what was happening. I was in highly unfamiliar territory.

I was seated a half dozen seats from the aisle. Since I couldn’t leave inconspicuously I decided it was best to wait till intermission. I did what I could to hold out till intermission. By then I had great difficulty with my balance. I couldn’t talk or even formulate my thoughts. I was in tears. In short my brain was so scrambled I could only manage a bit more than the basics, just keep breathing. (That night it took a long time to figure out how to breathe and sleep at the same time. When I fell asleep my breathing would stop. When I drew a breath it would wake me up.)

I had just come through my first and probably my worst of many experiences of sensory overload. I found out later that severe sensory overload can trigger some serious medical issues.

Four Years Later

I recently attended a showing of Come From Away, a moving story of 7000 people landing unexpectedly in Gander Newfoundland as a result of the 911 events happening in the United States. This time I attended a performance knowing what factors would put me into sensory overload.

Learning to speak Newfoundlander

The production on the day I attended the performance was billed for people with sensory issues. In general terms this would take in people who are neurologically atypical. This  could include people on the autism spectrum as well as people with acquired brain injury.

There were several accommodations that the theatre staff had made for attendees. If a person was dealing with sensory overload there were lounges available to provide a quiet place. An usher would remain available in the lounge. The lounge was equipped with a large screen so one could still watch the performance.

A special area was set aside so a person could be readmitted to the theatre without disturbing people near their original seat.

Some things were not described but I made some assumptions. I imagined the lighting would be toned down or the sound would be somewhat muted. I was wrong.

Before leaving home

The day we were scheduled to attend the performance I was not at the top of my game.  I spent an hour in the garden first thing in the morning but that didn’t seem to help much. I was feeling stressed, partly because of the number of things that had to be coordinated in course of the day in order to attend the performance.

We had decided to take a commuter train into the city to simplify the trip. We could avoid dealing with parking or the demands of driving in heavy city traffic. We did the 40 minute drive to the commuter train. The train took us to within a 10 minute walk of the theatre. It was a warm sunny spring day so that was also in our favour.

The Elgin Winter Garden Theatre

Elgin Theatre auditorium and box seats

We arrived at the Elgin Theatre an hour before curtain time. This was part of the plan so as not to be rushed with any part of attending the event. We entered the theatre, had our tickets scanned and waited in the lobby near the snack bar.

From where I waited I could see people as they entered the theatre. I found it interesting to watch people entering the building. As they came in I couldn’t help wondering which people were there because they had sensory issues like myself. In many cases one could not tell whether the person was a caregiver or whether they had sensory issues. Or maybe some groups had no one with sensory challenges.

With many attendees there were indicators that the person was neurologically atypical. For some it’s the expression on their face. For others their gait as they walked gave some indication. With some there were indications in the way they were holding hands with an accompanying adult or two. For the most part these and other indicators tended to be subtle and rather inconspicuous.

With other attendees it was quite obvious that they were dealing with neurological issues. Seeing someone arrive with a caregiver pushing a wheel chair while making encouraging comments to the person being brought in. Another person was brought in by wheelchair having difficulty keeping their arms and legs calm. Others had difficulty walking. With some there was involuntary vocalizations.

Emotional sensory loading

Before the performance even began my sensory loading was ramping faster than I had hoped. Seeing the challenges that others are dealing with is hard to ignore. That combined with observing the dedication of the caregivers in making the effort to address their quality of life needs is emotionally overwhelming at times.

Had I attempted this a year ago the emotional loading would have put me into sensory overload and I would have had to remove myself from the theatre even before the performance began.

Once I was seated I realized the overt challenges that quite a number of attendees were dealing with would remain quite noticeable. The young man two seats in front of me would wave his hands over his head regularly. His two caregivers took turns helping him control his movements and reduce the distractions for the people seated near them. Another person a few rows ahead was noticeable moving up and down through the whole performance. There were a half dozen attendees within my line of sight that provided some level of distraction.

Additional Instructions

The theatre had made arrangements to have a prompter on the stage for the benefit of the audience. Just before the performance began he explained two signals that he would give at various times. If he put on his head phones that was a signal that the volume would increase noticeably. If he put his hands over his eyes that was a signal that there would be some lighting effects happening shortly.

It was at this point that I had an inkling that the performance was not modified to give a reduced sensory impact. Rather, the theatre staff was there to assist anyone who needed to remove themselves from the auditorium. Shortly after the introduction the performance was in full volume. The opening song coming through loud and clear.

Unprepared

I had come to the performance not realizing this was a musical. I thought it was a play. Not three minutes into the performance I was overwhelmed. I was in the red zone. I was in tears. My ears were ringing, and I was putting all my energy into focusing on calming my self down and reducing my anxiety. After about five minutes the intensity of the sensory experience became a bit easier to manage.

At times my sensory loading would increase to a point that I thought it best to leave the auditorium. I was only three seats from the aisle so that was not to big a hurdle. Also, the people next to me would not have been surprised if I needed to exit given the type of audience in attendance.

Through a concerted effort during the whole 100 minutes (without intermission) of the performance I was able to take in the whole story.

Having a snack before the performance and again during the performance was helpful. I needed all the energy available to focus on avoiding sensory overload. It was physically a very taxing experience.

The sensory loading was coming from two aspects of the performance. The volume of the singing and musical accompaniment and the emotional impact of the story line. I hadn’t realized before coming that this was a musical. Live music continues to be one of my toughest sensory challenges.

The story had a strong emotional impact on me because it was based on the lives of real people. People having experienced loss. People having experienced separation from family during a series of stressful events, unable to reach them even by phone. People experienced hospitality with wide open arms from people with big hearts.

Through the whole performance I was struggling between the emotional sensory loading and the auditory sensory loading. It was an ongoing struggle with no let up. By the end of the performance I could not participate in the standing ovation.

I did not even try to get up till the auditorium was empty. I then got up and managed to slowly make my way to the lobby. I wended my way through the crowded lobby looking for a quiet place.

Elgin Theatre art show – Signal Hill

I headed down the stairs to the art display . No one else was there. Time to look at the paintings of Newfoundland. After about twenty minutes I was ready to walk back to the train station. The longer I walked the better my momentum became.

By the time I boarded to commuter train I was dealing with a low grade headache. The other symptoms from attending the performance had mostly cleared up. By late evening my headache had cleared.

Next morning I was stiff. Every muscle in my body felt like it had gone through an intensive workout. Chest muscles, arms, legs, fingers, back. The challenge of dealing with sensory loading for the 100 minutes was like an intensive physical work out.

In conclusion

Attending what was billed as a performance for people with sensory challenges was helpful in some ways while at the same time adding to my challenges.

Seeing the challenges others have with their sensory and related issues contributed significantly to the emotional sensory loading. However, attending a musical and dealing with an emotional story line, I would have had similar sensory challenges at a regular performance.

What I appreciated most about attending the performance is that it put me at ease about my own sensory loading. I felt I was in a socially safe environment. That reduced my level of stress helping to reduce some of my sensory loading. Not feeling at risk of embarrassing myself was a value added feature.

A day after the performance I was wondering why I didn’t make use of one of the accommodations that Elgin Theatre staff had made. I had been so focused on making it through the performance that I didn’t even entertain the ‘problem solving’ of considering the benefits of walking out. Had I walked out I would have been able to see the performance on the lounge screen. Next time I might walk out and try the lounge with the TV screen. However, I didn’t come to watch the performance on a digital screen so that wasn’t my ‘go to’ solution. However, listening to the digital version of the music would have significantly reduced my sensory loading.

Listening to the story line was a vicarious emotional experience. As such most of my emotional sensory loading cleared in an hour or two. That is in sharp contrast to recovering from personal emotionally challenging situations in which it often takes me several days to have the sensory loading clear enough to taking on my daily tasks.

Preparations to consider

The event caught me off guard on some elements. Though I was prepared for others due to previous experiences. That made me consider what I could have done to further help mitigate the negative effects on me.

My preparedness kit now contains the following items.

• Snacks: to help maintain my level of energy
• Headphones: to mitigate the effects of unexpected noisy environments
• Note pad: to communicate when my sensory loading makes talking difficult or impossible.
• Travel Pillow: assist with immediate short term recovery

Over time I will likely add additional items to my kit.